Saturday, August 29, 2015

Advocacy Day in Chicago

Greetings,
Attached and below is the announcement of our Advocacy Day in Chicago at the James R. Thompson Center. Please feel free to share and post on social media. We need your support, we need a good turn out to be effective!! Please make every effort to participate.

Blessings,
Bonnye
Bonnye Johnson MS. RN
312.996.5267
"When you want to be bitter, Choose to be better"

In a message dated 8/25/2015 8:04:58 P.M. Central Daylight Time, Bonnye9@aol.com writes:
Greetings,
Although UI Health Sickle Cell Center was put back in the State budget by our Legislators, Gov. Rauner vetoed the budget and his proposed budget still eliminates funding to the Sickle Cell Center.
We won a battle, not the war!
The Patient Council has scheduled two dates next month, National Sickle Cell Awareness Month, to demonstrate at the State of Illinois Building (known as the James Thompson Center) downtown Chicago and make some noise putting pressure on the governor. Issues are and remain:
Restore Sickle Cell Funding and then pass the budget!!!
Support HR0255 that urges Department of Healthcare & Family Services to waive the 30-Day Readmission rule for those with SCD!
We will meet Thursday, August 27, 2015 6p-8p to plan and strategize. There must be a large show of supporters if we want to make an impression as we did in Springfield in May. So please make every effort to attend.
Location: 840 S. Wood Street, Suite 172
time: 6p-8p
Conference Call in will be available:
dial in: 1-712-432.3100
Code: 710126
In the meantime, calls can be made and messages sent to the Governor's office:
Gov. Rauner can be reached at:
https://www.illinois.gov/…/contac…/Pages/VoiceAnOpinion.aspx
Springfield Chicago
Office of the Governor Office of the Governor
207 State House James Thompson Center
Springfield, IL 62706 100 W. Randolph, 16-100
Phone: 217-782-0244 Chicago, IL 60601
Phone: 312-814-2121
Illinois Legislators can be reached at:
http://www.ilga.gov/
http://www.ilga.gov/house/
http://ilcommunityschools.org/…/Advocacy%20-%20How%20to%20c…
http://www.house.gov/representatives/find/
Remember the "Squeaky Wheel get's the Grease"
Hope to see you Thursday.

Blessings,
Bonnye
Bonnye Johnson
312.996.5267
"When you want to be bitter, Choose to be better"
http://www.house.gov/representatives/find/

Thursday, August 6, 2015

Momma Fran: daily update; we're close to coming home

Hello Everyone
We are closer to coming home. Marqus has an amazing spirit it is not easily shattered.
Everyday we step out on faith .
In order to understand this post I have to share a story.
Many years ago when Marqus was small and we went to Loyola Kevin would go in the playroom and occupy himself while we attended to Marqus .
We were so grateful for the volunteer grandmas that helped.
The kids whose siblings had cancer were invited to a group to discuss their feelings
No such group existed for siblings of kids with Sickle Cell. Kevin asked why they didn't include him just like Kevin's son asked why cant they take away Uncle Marqus Sickle Cells.
Even though Kevin was young he felt the pain and sadness and tried in his young mind to understand why his little brother hurt so much why his little brother was on a ventilator why we had to cancel birthdays or miss great America. As a small child Kevin asked me would we love him better when he gets Sickle Cell.
Having a family member suffer takes it toll on everyone but they must understand it is not their fault and they have to have the strength to fight the good fight.
Marqus at five years old told me its was not my fault for his illness or dads fault or Gods fault or anybody's fault. He just told me not to cry and he would be ok.
You see that's why we feel the pain but have to take care of ourselves we have more fight and the book not at the end.
Any chronic life threatening illness has an effect on the entire family unit.
We may seem tougher than most but
We believe what doesn't kill us makes us strong and God gave us what we can handle for a reason.
We have worked together for Marqus ' entire life Sharing so many responsibilities.
Our fortitude taught our kids to persevere.
Marqus desire to be in this world despite horrific pain a brutal war inside that renders many organs dead he has kind words .
The reality that all we really have is time no matter who we are hits home and
Finds itself bringing us to tears intermittently with memories of joy
On top of our minds racing wondering
What life can be without our family unit.
We are blessed to be a family unit I don't care how broken down our house is I don't care what laundry is not folded
We pay the bills but call and try to Harass
Me for something I can't pay now not worried. As long as we are breathing all will be done.
Watching the level of suffering for someone you love does leaves scars ptsd nightmares call it what you want it is a normal reaction.
When Marqus was about 6.5 yrs old he was on a ventilator after breathing 78 breaths per minute and having his first episode of acute chest.
I didn't sleep for months I left the SICU because I couldn't tolerate the sounds of the ventilator.
Feeling anxious is ok it's real it's emotion.
We are just used to not wanting to spread our burden on others because they may be carrying their own crosses that day
We have to remember our joy remember what makes us smile at the end of the day.
Hey husband has this amazing ability to make us laugh. Our pets are comforting
They are keenly aware of our emotions
Family is our circle that cares the outpouring of support means so much to us.
Marqus hs his 3rd birthday with a NG tube in his nose , he just got a new paediatric port a cath and I found a blow up cake. His guest at the Loyola playroom party were nurse med students his brother and anyone who wanted to join us. His 32nd birthday was in the family room at Edward hospital with lots of friend and. family no NG tube
A beautifully working port a cath and breathing well
The cup is more than half full he had a 32 nd birthday.
So emotions are our soul worry about folks who have none.
They are symbols of our passions and zest for life
Be sure to reach out we don't do that often sometimes we are silent sufferers
So as not to burden others.
At the end of the day all we have is time
Please don't miss the sunshine , a real smile not an emoji , ride a horse , pet a dog cat , laugh, give a hug , make a list , say sorry in person with your voice , look up from your phone. Don't miss your persons that make up your world.
This may be the most I've written in this site in a long time thank you for following
We forgot to reach out and just barrel forward trying to complete all the life tasks and somewhere in between live.
I think this is a reminder to live the life tasks will still be there even when we are not.
One day at a time
One tasks at a time
Marqus says slow and steady wins the race.

Tuesday, August 4, 2015

Momma Fran: Speak up your life and Health depend on it!!

Marqus had to advocate today for himself. He was assumed to be drug seeking because the anatomy and physiology of osteonecrosis was overlooked. Years ago one of my nursing instructors told us to NEVER assume!! There is no place in our line of work for this mentality. Ill placed judgements and Assumptions can be deadly. The pt should not have to fear their care will be affected by what the nurse thinks of them. Like it or not patient character judgements Do affect the quality of care. His sister was on the phone thank goodness. I was getting in my car. This day brought him to tears he's battle weary BUT not broken. He composed his self and spoke his mind. I composed myself calmed my rage after almost losing him 2 weeks ago and said Marqus dial Zero on your hospital phone and call the head nurse. His sister was on the phone from DC. The last time this happened was many years ago a nurse sat by his bed and told him "you won't be getting anymore pain meds on my shift". Wow here we go again folks like this make it harder for the professionals to actually do their jobs. Osteonecrosis is painful causes bone edema and inflammation. Like Marqus said Do you honestly think I wanted to spend my 32nd birthday in the hospital????By the way Marqus walked on a dead knee for 4 years while we fought for an allograft. He pushed his knee cap back in place!!! Let me review. Events from 7/12 forward. Massive sickle crises. Acute chest. Fever. Sepsis. ICU. BiPAP. Neb treatment with PEEP. Blood cultures MRI. WBC Scan fentanyl PCA. 5 units of blood 7-8 specialists Numerous Excellent nurses multiple tests etc. and the question of drug seeking REALLY? This aggravates me as much as the time I was accused of Munchausens Syndrome by Proxy!!!! The good does outweigh the bad BUT all it takes is one assumption to miss the critical symptoms that can possibly lead to a persons death. When he was small he would not say a word until I got to the hospital. If he felt no one cared he was silent. Don't do that!!! Speak up your life and Health depend on it !!!!!